1. < Neuroendocrine Tumors (NETs)

PRRT and Lanreotide

Posted by susan481 @susan481, 1 day ago

Hiya. My partner is on her fourth monthly lanreotide & just had scans. They showed significant growth in liver despite the treatment ( grade 2, stage 4 pancreatic origin). Doctor recommending PRRT added to lanreotide.

Anyone else have lanreotide not do its job? And any experience of PRRT?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago

Hello @susan481,

On Connect, we have numerous discussions from members who have had treatment with PRRT. Here is a link to those discussions.
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=PRRT#discussion-listview
Here is a Mayo Clinic video that explains the various treatments for pancreatic NETs, https://www.youtube.com/watch?v=JMNYPFSK9sQ

I encourage you to view the video, read these posts, and reply to any of the members who have posted. You will see that many patients have responded quite well to the PRRT treatment. Does your partner have any particular concerns regarding PRRT?

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susan481 | @susan481 | 1 day ago

Thank you! And I will post her concerns once she has processed the news further!

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sophiarose | @sophiarose | 16 hours ago

I did PRRT with octreotide
Finished treatment in November of 2024
I am still receiving Octreotide
My March MRI and PET showed no new growth and some tumors shrunk
I get another MRI in July fingers crossed
My May blood tests were very good
I wish your partner the best and you as well

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zacharycat | @zacharycat | 12 hours ago

PRRT was easy to tolerate and showed results (tumor shrinkage). The main thing is avoiding contact with people (especially children) for two days after, not sharing kitchen utensils and if possible using a different bathroom during that time.

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Mentor
Turkey, Volunteer Mentor | @tomrennie | 11 hours ago
In reply to @zacharycat "PRRT was easy to tolerate and showed results (tumor shrinkage). The main thing is avoiding contact..." + (show)
@zacharycat

PRRT was easy to tolerate and showed results (tumor shrinkage). The main thing is avoiding contact with people (especially children) for two days after, not sharing kitchen utensils and if possible using a different bathroom during that time.

Jump to this post

This might be asking the obvious, but is that due to you being radioactive? Can you actually feel anything when you are? Thanks.

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1 reply
lindabees | @lindabees | 11 hours ago

I'm sorry your partner is going through this. I know how disheartening it is when the first line of treatment doesn't act as you hoped it would. Fortunately there are many good treatment options, prrt being one of them. Sometimes its a combination of therapies that work together that gets a good result, like prrt and lanreotide. Also lanreotide with everolimus and captem with lanreotide have been studied.
Is your partner seeing a net specialist?

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1 reply
zacharycat | @zacharycat | 10 hours ago
In reply to @tomrennie "This might be asking the obvious, but is that due to you being radioactive? Can you..." + (show)
@tomrennie

This might be asking the obvious, but is that due to you being radioactive? Can you actually feel anything when you are? Thanks.

Jump to this post

I felt nothing, but they say a geiger counter would definitely be clicking. They even gave me a letter to carry in case I had to fly and set off an airport detector (this would be after the first three days during which I couldn't fly at all or even ride a bus).
Sometimes I think they went a bit overboard on caution, but they're the experts.

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1 reply
susan481 | @susan481 | 8 hours ago
In reply to @lindabees "I'm sorry your partner is going through this. I know how disheartening it is when the..." + (show)
@lindabees

I'm sorry your partner is going through this. I know how disheartening it is when the first line of treatment doesn't act as you hoped it would. Fortunately there are many good treatment options, prrt being one of them. Sometimes its a combination of therapies that work together that gets a good result, like prrt and lanreotide. Also lanreotide with everolimus and captem with lanreotide have been studied.
Is your partner seeing a net specialist?

Jump to this post

Thanks - yes to net specialist!

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Mentor
Turkey, Volunteer Mentor | @tomrennie | 4 hours ago
In reply to @zacharycat "I felt nothing, but they say a geiger counter would definitely be clicking. They even gave..." + (show)
@zacharycat

I felt nothing, but they say a geiger counter would definitely be clicking. They even gave me a letter to carry in case I had to fly and set off an airport detector (this would be after the first three days during which I couldn't fly at all or even ride a bus).
Sometimes I think they went a bit overboard on caution, but they're the experts.

Jump to this post

@zacharycat

I set off an airport detector after a Ga-68 Dotatate PET scan once. I got pulled aside by a TSA manager that showed me the airport scan. I laughed a little when it showed exactly where my cancer was. She asked me about my cancer. Her mother was just diagnosed with pancreatic cancer. She let me through, drove my wife and I to our gate, and talked to us for a while as we waited. Has anyone else had anything similar happen?

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